Finding the words to make it better

Most of the stuff I have posted is retrospective, reflections on difficult times. Times that for the most part I like to think that I have processed, well on a good day, with a fair wind and all, it is no longer searingly painful to think about. This is progress.

My kid is now home, my fears that she wouldn’t be recognisable, that the relationships that she had with everyone would be fractured and changed were not realised. She is very different, stronger, more insightful, politicised. It was like a crash course into young adulthood. I don’t think she would have come so far so fast had she not been so ill that she needed to be hospitalised.

She is definitely in recovery and although she has lots of community input, so love that expression, ‘support in the community’ she is doing so well and it is fantastic. There is still the ED to be tackled, the voices can and are a trouble but I hope she is over the worst.

So recovery is a good place to be, however, the scars on her arms are a vivid reminder of the time of her acute illness, they are extensive, some are keloid , she has significant nerve damage, which is painful but fortunately she still can use her hands and although there are some issues with dexterity on balance it is not too bad. They are stare-worthy, even by professionals who have seen this kind of thing before, they are worthy of comment from complete strangers when she pulls up her sleeves to wash her hand in a public loo. They are in your face kind of scars and clearly are self-inflicted.

Today we went to the GP, her medications can cause heart issues and her pulse is often all over the place, blood pressure up and down to the extreme and fainting on exertion so that was the on the agenda but also to ask for advice on the scarring. We deploy moisturise, moisturise, moisturise as a maxim to live by and then moisturise, bandage and compression bandage, this seems to make them less painful. The weather is getting colder and the cold makes the discomfort worse, epic levels of moisturising is called for.

The GP advised there was probably little to be done but would refer on, there is the option of discussing cutting some of the major ones out leaving a tidy clean line.

It is a hard one, it is tempting to jump onto the wagon of invisibility, of providing an exterior that does not immediately identify her as someone who used to self-harm, to be anonymous, to not have to notice people noticing, to be able to make a decision about what is shared and what isn’t. It could turn your head, the idea that they could be disguised as something else, perhaps from a nasty accident.

Fight mental health stigma. I want to stand up and be counted. To poke the naysayers in the eye, with a sharp stick. To encourage her to accept her body, to marvel at its powers of regeneration and to see the beauty in her individuality.

But then there is this shallow part of me, the part that wants this all to be over, where the outward signs have been minimised. In the dark hours I have wondered whether skin grafts are possible, contemplated that with body make up they could be rendered almost invisible, at least from a distance. I want things to be easier for her. It is so much more straightforward to uphold the fight of self-acceptance if it is not happening to someone you love and listen to their upset over unkind comments from strangers.

I wonder if it makes me very shallow. It is an uncomfortable thought and doesn’t fit with the world view I have of myself, the liberal, the petition signer, button badge wearer, the avid recycler. The love yourself, there is beauty in every body and so on. The world seems to judge on the outward presentation so much, I know this is hardly a revelation but I really have been surprised how people feel that it is reasonable to comment on her scars, my personal favourite of a random woman commenting that scars shouldn’t be on show as there are ‘children around’. I know that this will be the first of many such comments and she needs to be tough to deal with it. This feels like a challenge for someone who is fragile to start with.

Then I try to remember, recovery is about acceptance, warts, well scars and all. They are marks of a battle royal. A war with herself, that she has fought, hard and exhaustively, that has taken such strength of character to fight and to start winning.

They are fading and she hasn’t added to them for almost 150 days, although they are not aesthetically pleasing, we know that and there is temptation in the possibility that they can be made to look neater, less brutal, they are part of her and her journey to recovery. Now becoming more positive reminders of how far she has come. I was so impressed that on reflection the only way she wanted to consider scar reduction was if it would reduce the discomfort, not to improve the look.

I felt that was a tangible sign that she is moving to accepting herself and having a greater understanding of her difficulties and her achievements. I need to support her on her way.

At any moment in our lives we are the sum of everything that has gone before, of all our experiences, good, bad and indifferent and there is no reason to hide.

Tonight, watching Strictly Come Dancing I was reminded of another Strictly results show, spent watching with sub titles in the A and E waiting room. We are coming up to the anniversary of my girl’s admission to hospital, so the wheels were very much coming off the wagon. This was the final week before the decision to admit her was made; we then spent the better part of one of the most surreal weeks of my life waiting for her to get a bed.

Our visits to A and E had become increasingly frequent, we were now regulars. You become to recognise the staff you like, who are sympathetic and efficient, are not scared to break out the iodine in quantity. Despite being young and with a reasonable diet, well what stays inside anyway, even youth cannot cope and regenerate as quickly as the emotional turmoil needs it too.

It is injury on top of injury, a catalogue of distress. Each one seems to take it further down the path of greater obviousness;, we have moved towards and then beyond the point where this is going to be something that will leave no trace and however good the recovery there will always be evidence to be seen.

Throughout the self-harming the most we could go between visits was ten days. This is not to say there was no self-harm in those ten days but we had developed a very efficient and effective first aid system. We had our own steri-strips, salt water at the ready, dry spray iodine, a vast array of dressings. We got very good at patching her up, for us it was better to deal with the more superficial injuries at home. If you can’t see fat it will probably be OK to treat at home was the maxim we lived by.

As her self-harm was very tied to her sense of being able to do something ‘right’, it was very wrapped up with her voices and therefore if we went to A and E and they considered the injuries to only require gluing and not stitching, this would lead to another round of self-recrimination and self-hatred.

I am not medical, I base my first aid on the Brownie badge I got when I was eight years old and a first aid course in work some twenty odd years ago. This is not my thing, I am very squeamish, these events are another opportunity to develop my new uber-competent persona.

Despite having had loads of involvement with mental health services, it still surprises me that there are no booklets, guides or even classes about what to do under these circumstances.

What do you say? At times, I would have given pretty much anything to have been given a clue, a little guidance, better still a script.

The need to improvise each and every time is exhausting and nerve wracking. This whole experience has the feeling that you have messed up as a parent, that you have failed to notice something massive that has had a catastrophic effect on your kid’s well-being . The desire not to make things worse, to fail when it really counts, is very strong and you’re winging it. It is not a comfortable feeling.

I did have some knowledge of self-harm before and the importance of being calm and not being judgemental.

However, this is beyond, that knowledge, this is ridiculous, this is really, really stupid, this has no sensible explanation. It feels that a stern talking to, should really be the order of the day.

In other times, when your kid does something wrong, you tell them, you try to put them on the path you feel is correct, surely it is worth a go at this approach under these circumstances? Desperate measures?

Clearly, you are not pleased with this activity so it is a good idea to be cross parent? Pointing out that this is not a good thing? That the voices can go and do one and that they do not have her best interests at heart and that they are not real?

Then you look at this pale, shaking, sweaty, clammy person and the realisation that tough love and a reality check is not going to cut it under these circumstances. This is the time in the cycle when she knows, where her feelings of shame and confusion seem to be at their height. Stern words are not going to help.

There have been plenty of times when you have needed to be tough and push her into doing things that she didn’t think she could do, be that another appointment, going to school, talking to someone in a shop, answering the phone. You need to pick your battles; this one is too big to win.

It was all about swallowing the fear and screaming frustration. The accepting that for now you will not be having the conversation you feel you have inside and learning to front it.

It is so one sided, there is no space for your emotions. The role that you play is to suppress as much as possible. You long for the opportunity to not have to think about what you say before you say it. The need to be accepting and positive means that there is no place to actually speak as you see it.

It is all about keeping the personalised censor on high alert. It is mind meltingly tiring, you worry that you will never have a genuine conversation where you are dealing with a young adult. Where you can discuss situations and events in a way that feels real. That is not an attempt to manage difficult emotions and say something that makes a positive difference.

It is now a year since we have been in our local A and E, feeling the irritation that someone who is not a regular is in my seat. It is amazing how territorial you can become over very little things. The conversations are still tempered and guarded; my role is still one of being the back-stop of trying to provide positive explanations and encouragement.

Although there is no end in sight, she is looking forward and I will continue to take my place as the suppressor of my emotions for as long as is needed.

Well it is definitely not an accident but it is an emergency. The thing about BPD and self-harm is there is really no way to predict that today will be an A and E day. It can happen after a really sad, bad day or after a really positive upbeat and seemingly stable day.

Sitting painting my nails ready for the upcoming week at work. Must keep up those appearances! Sometimes it is just doing these little things that make you feel more together. When it gets particularly tough matching underwear improves the mood and gives a sense that if I can get myself together enough to have matching knickers and bra – I am the type of woman not to be messed with. I can do anything, they are like a super hero’s cape, only less obvious.

It had been a good day, I am watching Strictly Come Dancing, the results show, doing my nails, number one son is plugged into his head phones, she is having a shower. I am called, it is so strange how even a few syllables can denote emotion, you can hear the fear. This is a bad one, she has already made the trade-off of the potential embarrassment of being seen semi-naked against the knowledge that this needs help. Must have nicked a vein, it is messy, blood pooling in the shower tray, droplets on the floor, a bit of splashing on the wall….looks like a crime scene.

Stitches are going to be necessary, can tell this from a brief glance, Brownie Guide first aid training to the fore, it is all really basic, if you ignore that this is your child, your little girl and that she has done it to herself and, yet again, you didn’t see it coming. All the trawls of the bedroom and hidey holes have been ineffective.

You know the score, application of pressure, try to put the edges together or at least make it look a little tidier, elevate the limb, this is now a well-worn routine. Lean in turn the shower on, wash the congealing blood away. Remind yourself to get the bleach out from its safe place.

Unfortunately, not enough hands, am going to need some help, number one son needs to be deployed. He is not usually at the coal face, he really doesn’t need to see this. She is now quite woozy, clammy and shocked, her protestations about needing preserve her dignity are now being eclipsed by getting her to somewhere with enough safe so that if she falls she is not going to get a concussion on top of everything else. Also, we need to get to A and E and she needs to get dressed.

Number One son arrives on the scene, I get the arm and provide the support against falling over, he gets to hold the carefully draped towel.He hold the towel from behind, it is like a train. We process down the hall to the sitting room. I get a flash in my head of the world’s most bizarre bridal party, rocking up the aisle.

It is the dance of the one bath towel, like getting dressed on the beach; it is a long time since she has needed to be dressed. Wrestling her into her clothes, whilst staunching the bleeding, it ruins the nails.

We head off the A and E, we are regulars. We have our favourite staff, from the friendly receptionist, who recognises you and remembers her name, to the Nurse Practitioner who will do the stitches. Hell, we even know the cleaners. I would always go with a nurse rather than a doctor generally, they seem to be better with the stitches. Although, on this occasion they must have been short staffed so she got a surgeon, his stitch work was very good.

The lights are always so bright, the waiting room always so hot, sitting on the seats. The atmosphere is soporific, it is the combination of the heat, the bright lights, the hum of the vending machine and the leaking of the nervous energy, the adrenaline is leaving the scene.

Sitting there watching the end of the results show, with sub-titles, stroking her hair wondering when the next time we will be back and where this will end.

Return the community, is how discharge from hospital is described, we called it coming home. It is funny in a weird way how everything becomes jargonized, arranging service in the community rather than help when you get home.

Most odd, it is the change that I made when my kid became ill, I stopped being their mother and became their carer. I am still their mother. Normal relationships and ties cease to be primary when someone is ill. It feels like you need to fit with the forms and the care plans that must be created.

It is difficult being on the cusp, if I hear the phrase development of the therapeutic relationship again I might actually high five someone, anyone, in the face with a chair. It is not just the cusp of coming home but the big news for us is despite the conversations occurring when my kid was only seventeen in a half, therefore eighteen is a whole half a year away is she is almost an adult…six months away but the development of the therapeutic relationship is paramount.

It is another twist of the screw that this is an on-going, probably permanent psychological state, diagnosis is both a blessing and a curse it gives an explanation for the behaviours but it also indicates that this is not a phase that there is no prescribed end in sight. This is a living with and not a return to the life that you knew, kind of state. Recovery has different parameters now, it is a challenge to accept that recovery comes in different guises and it is not a linear progression, the paradigm of illness, treatment, recovery, no longer is an option.

I feel so stupid. I have known this but not acknowledged it, for a while, probably since about halfway through her admission but there was still part of me that hoped that this would still be something that she would fully recover from and would be able to step back into the life I was expecting her to have. A hiatus from an expected trajectory, a learning experience, humility learned at an early age, maybe leading towards the development of a more compassionate adult. There is a big difference between knowing and accepting.

No one actually says out loud this is likely to be lifelong, you are seemingly supposed to gain this knowledge through some kind of psychic osmosis – well that and Google. This is what BPD is, hey, throw off the mantle of anxiety and psychotic depression….that was just a rouse to carry you through to this place where the reality is revealed, ta dah. It is like some kind of grim TV show, where they do the big unveiling and leave you to deal with your Rocco living room when you liked minimal.

Back in the day we were told that this was not going to be enduring, that there would be conventional recovery, despite my best efforts, I feel cheated. I don’t feel that anyone deliberately mislead us but it still requires a massive change in world view. I wish I was nicer, that I could find it genuinely easy to accept this seismic change and that it was not such an uphill battle.

If I just look at her, I just see her and there is no need to seek acceptance, she is there. Like always, just my kid, with all her foibles, her quirks, there is no diagnosis, it is just who she is and I love her. That bit is easy.

When I started writing this is was going to be about the positive things and looking back but pressing forward. Re-reading what I have written there is a lot of looking back over events that happened nearly a year ago, none of which has been particularly cheerful. We are coming up to the anniversary of admission and we are two months on from discharge. Good is relative but things are so much better.

Over one hundred days cutting free, this is an amazing achievement for someone who at their worst was doing it ten times plus a day. Colour coded razors for every part of the day, such was her level of obsession.

Self-harm is an addiction for my kid, it went beyond the emotional release that I had always thought it was. It is monstrously complicated and in her case so tied into her identity and sense of self it was both heart breaking to witness and confusing to try to understand.

The idea that someone can feel that they are good at doing something which is clearly so bad for them makes my brain hurt. It does not make sense but in a bizarre way she had a desire to be something, to do something well. That was something that could be channelled for the positive, not that we could do that alone, hospital was essential for her to make that breakthrough.

I feel that I was and am amazingly lucky in that I had a kid who wanted recovery even if at the beginning she was telling me that she was doing it for me and she still wanted to die. I was happy to take that, negotiation means change is possible.

She still wants recovery, she has ambitions to see the world, to be creative, to live and experience life. This makes it so special now when she talks about her future.

A future, that at her worst she didn’t want, she only wanted to die, she wanted it to stop.

It is still a day at a time and relapse is an ever present possibility. The world is still small and very insular, filled with safe people and gentle situations. And a massive level of surveillance but it is getting a little bigger each passing day.

It gets worse when your kid can’t bear to talk to you on the phone, it is too distressing for them. You are left with having to make do with staff updates. They feel generic and lack the depth of understanding of your kid that you need.

You have a feeling that you are being assessed as to level of your involvement in your kid’s mental state, how did you affect their well-being, did your actions or lack cause this? And if you have anything in your family background, death, disablement, divorce it feels this will (and is) seized on as the trigger for your kid’s emotional decline.

You feel like a peeled onion, exposed, raw with nowhere to hide and of course you are not the patient you will only be told what they think you need to know and what your kid wants them to tell you. From living cheek by jowl, there is now a barrier between you and your kid.

This is one of the lesser thought out delights of having an ill adolescent, on many legal levels you are the parent, you hold total financial responsibility for your kid, they can’t claim benefit, can’t get married, can’t legally smoke or drink, vote. However they can ensure that you as their parent know nothing about what they are doing when in hospital. The staff check with every call whether your kid will speak to you, whether they are happy for you to hear any snippet of information

This was not your experience but do feel that it is an anomaly that you are expected to take the responsibility but can be excluded from the information if strangers perceive that you are not appropriate.

You, therefore, feel the need to behave uber-appropriately at all times, you do not want to annoy these people in anyway because they are your direct line to your baby. You want to know the plan but don’t want to seem oppressive or intrusive you want to know their ideas and then get annoyed that they seem to be going down the same well-worn route as professionals in the community.

You are desperate and ridiculously grateful but are still wrestling with the sense of personal failure and to have a barrier between you and your kid is hellish. It compounds the feeling that you have messed up in epic fashion and that if you had been better, more assertive, more confrontational about things that your kid had difficulties with they might not have been in this position.

You would like to be like Cher in the Eighties movie you can’t remember the name of where a young Eric Stoltz is her son and has some condition that caused facial disfigurement and she takes on the whole world. In a full on bad ass, don’t mess with my baby, ninja mother kind of way.

Mind you she is also the member of a biker gang and leather is not a good look on you, also you might want to check the endless self-flagellation and self-recrimination, take off the hair shirt while you’re at it, as that is not a good look either and frankly unless you have suddenly developed a latent talent for time travel you cannot go back and change a thing. You are where you are and moving forward is really the only thing that matters.

Also, it was a movie and they are largely bollocks when it comes to true to life stories.

When you have a kid who in four years has had more therapy than Woody Allen has had in a lifetime, conversations take on a skewed tone. It is like living in an episode of Oprah when Dr Phil is on. Every conversation seems to start with ‘I feel’ and ends with ‘does that resonate?’

The everyday is suddenly seen through the prism of analysis. Your kid, who really should be eye rolling at the general embarrassment of you being you and huffing at your lack of understanding of their clothing choices, music and other expected points of abrasion, is suddenly is an expert on your psychological functioning and presentation.

Maybe this is the case with all people in their teenage years that they have all have a searing ability to analyse their parent’s shortcomings but from the outside this seems to usually confine itself to teenagers making unsolicited, borderline rude, observations about Dad dancing, poor fashion choices and an inability to understand that LOL does not mean lots of love and that you don’t know your gifs from your memes.

We were driving, it is theme to our lives, we seem to spend an inordinate amount of time in the car, some of my best memories are in the car, I digress as this wasn’t one of them. Having spent money on National Trust membership in an attempt to experience our Country’s history and architecture and to raise suitably geeky kids that I could communicate with, we head off to find such a national treasure. Failing as ever to notice that once out of the major cities, all these places are situated in the arse end of nowhere.

I hate being lost, I mean really hate it, I hate it the physical and the metaphysical sense, I hate it so much, I could and often do cry. So we are trundling down the back roads, having been sent the allegedly fastest and most direct route by the SatNav. Why these always involve grass growing up the middle of the track I have no idea, they always do. As luck would have it not only are these places off the beaten track they are apparently beyond satellite coverage too.

Hearing the words ‘GPS connection is lost’, my anxiety starts to rise. We are in the back of beyond. I have no sense of direction and my patience has evaporated as quickly as the sweeties bought for the journey that we inhaled several hours ago. The f- bombs start to fly, followed by ever more imaginative combinations of favourite swear words. The steering wheel is gripped ever tighter as we drive around aimlessly. Always summer, always high hedges, always a van in front, no view of anything ahead or to the side just the tunnel on the track to nowheresville. Whose stellar idea was this?

It is at this moment when my very therapized fifteen year old daughter feels the need to advise me that I do not handle frustration very well and that I should really consider working on this and have I been keeping up with my mindfulness practice? I wonder briefly if it would cause further psychological damage if I just start biting chunks out of the steering wheel or whether just making do with muttering ‘sod off’ inside my head will suffice.

I choose the latter; it seems the more sensible option with less long term effects.

That is one of the weird things about living with someone who is both an adolescent and unwell. They do the same things as everyone else’s kids but they do it differently.

Where I was expecting to have to deal with comments based on a lack of understanding that I consider it fine to wear a dress that low cut whilst the girls can be still hoicked up with a combination of advanced under wiring and chicken fillets, it not at all muttony and no you cannot smell the mint sauce, I get conversations about mindfulness and the power of breathing techniques.

Where I was expecting the arguments about being collected from parties and curfews, I get arguments about managing medications and not being trusted with scissors.

Sometimes, I long for the eye rolling conversations about the (what I now perceive to be) superficial stuff that I hear others talk about and I miss being able to share that rite of passage with other parents. I miss the teenager I was expecting to have, the regular worries and rows that everyone else seems to have. The pride in the regular, expected achievements and milestones that other people’s kids have.

Most of all I miss being able to share the milestones and achievements of my kid to an understanding audience of my parenting peers. Hers may not be the same as everyone else’s but they are hard fought for and won. Her battles are daily and she is often exhausted by fighting but she keeps on, the level of emotional maturity and understanding she has is immense and puts many educated adults to shame.

I am very proud of her and am learning to live with a life where the arguments and comments go beyond what I was expecting but the dynamic is still the same.